Key Publications

IPOPI is pleased to announce the publication of the ‘PID Principles of Care Implementation Package’, a new key document designed specifically for our National Member Organisations (NMOs) and aimed at facilitating the use of the “Primary Immunodeficiencies Principles of Care” paper.

Over the last two years, IPOPI combined its efforts with a worldwide multi-disciplinary team of specialists to develop the “Primary Immunodeficiencies Principles of Care”. The paper outlines the key necessary elements and policies that should be in place to provide a "gold standard" framework of diagnosis and care for primary immunodeficiencies.
IPOPI is pleased to announce the publication of its survey manuscript looking at Improving current immunoglobulin therapy for patients with primary immunodeficiency: quality of life and views on treatment.

The IPIC2013 Report of Highlights is now available online! In this report read about key highlights from the first edition of IPOPI's successful event attended by 400 participants.

PLUS, the Platform of Plasma Protein Users, represent organisations of patients with treatable rare diseases linked by common therapies based on products manufactured from human plasma.
Irish Haemophilia Society, Steering Group PLUS, Dublin, Ireland
The IPOPI PID Patient Needs & Outlooks Survey was carried out during the second half of 2011 and is based on completed questionnaires from 300 patients and care-givers of people living with a primary immunodeficiency and treated with immunoglobulin replacement therapy.
IPOPI’s recently released a co-edited issue of Pharmaceuticals Policy and Law in collaboration with Professor Jose-Luis Valverde (University of Granada, Spain) looking at Health Technology Assessments (HTAs) and Rare Diseases Therapies.
This issue of the Pharmaceuticals Policy and Law series (Volume 10) published by IOS press and edited by Professor Jose-Luis Valverde, was co-edited by David Watters, IPOPI and released in February 2008. The publication brings together articles from various expert authors...
This is the first international survey carried out by IPOPI. The survey was conducted between February 2010 and August 2010 to establish a mapping of several criteria among IPOPI's NMOs including estimated number of patients in each country, known diagnosed PID cases, patient demographics, presence of registries, collaboration with international registries, provision and funding of care, availability of treatments, presence of national medical advisory panels and communication tools.
This new IPOPI publication is now available for download on our website. Within a national healthcare system, selection of immunoglobulin (IG) therapies for conditions such as Primary Immunodeficiencies (PIDs) is difficult. In well-resourced countries, regulatory agencies make key decisions regarding such therapies' quality and safety; such regulatory agencies, including the U.S. Food and Drug Administration (FDA) and the European Medicines Evaluation Agency (EMEA), are dedicated to assessing products and to granting marketing licenses.
This new IPOPI report summarizes some of the highlights of the XIVth ESID Meeting's scientific programme. IPOPI would like to thank Dr Peter Spaeth for his precious help with this document.
Maj-Lis Hellström, founder in 1978 of PIO, the Swedish organisation for patients with primary immunodeficiency, and an officer of the IPOPI board for eight years, has put together a collection of stories from 14 countries. 49 authors mainly patients and parents, but also doctors and nurses have contributed to this book.

A helpful guide for patients and caregivers By Sara J. LeBien

PID Glossary
The World Health Organization (WHO) recognizes over 150 primary immunodeficiencies including X-Linked Agammaglobulinemia (Bruton's Disease), Common Variable Immunodeficiency (also called Hypogammaglobulinemia), Selective IgA Deficiency, and Severe Combined Immunodeficiency (boy-in-the-bubble disease).

 

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Other key external publications include:


PLUS - Dublin Consensus Statement 2011


The Dublin Consensus Statements 2011 on vital issues relating to the collection and provision of blood components and plasma-derived products. You can access the document here.

 

PLUS - Dublin Consensus Statement 2010

The Dublin Consensus Statement 2010 on vital issues relating to the collection of blood and plasma and the manufacture of plasma products. You can access the document here.




Expert recommendations on Better Management of Primary Immunodeficiencies

In March 2010, IPOPI participated in an expert group meeting on Primary Immunodeficiencies held at the European Parliament in Brussels, Belgium. The key outcome of this meeting is the publication of a set of expert recommendations to the attention of EU Member States decision makers on necessary actions that need to be taken to improve the management of PIDs. You can access the document here.



World PI Week
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IPOPI would be grateful for any support to the important work for primary immunodeficiencies.

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Contact
Executive Director: Johan Prevot
Email: johan@ipopi.org
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